Just Diagnosed

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dee1961
dee1961 Member Posts: 1,672
edited June 2014 in LGBTQA+ With Breast Cancer
Just Diagnosed
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  • dee1961
    dee1961 Member Posts: 1,672
    edited March 2009

    New thread for lesbians just recently diagnosed-to share your story and ask questions.

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  • dswope
    dswope Member Posts: 70
    edited March 2009

    Hi again Dee,

    It seems the more I read, the more questions I have....what are the "tatoos" one recieves for radiation?  Real or just markers of some sort?  I feel like an idoit!  Thanks again for the ither info concerning my dx. 

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  • dee1961
    dee1961 Member Posts: 1,672
    edited March 2009

    Hi Deb,

    I'm sorry I do not know alot about radiation, I did not have to go throught that part.

    I have heard some women talk about markers and radiation, but I really don't understand what all of it means either. I'm sure someone will come along to help explain it. Did you look on this site for radiation therapy? You are not an idiot, you will learn alot as you go along, we all did.

    Check through all the threads on this site too, I know that there has to be alot of info here about radiation treatments.

    Take care and keep in touch :)

    Dee

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2009

    dswope

    the tatoos you are asking about are tiny dots the tatoo to map the area for radiation treatment...they do it this way so that the marks dont wash off and so that they are always in the same place....

    Im assuming you havent had the mapping for radiation treatment done yet??? This appt will take awhile and it is tiring as they make you lay completely still and generally have you twisted in a odd position....

    As Dee said: your not an idiot at all!!!!! None of us knew what any of this meant until we were faced with it.....you learn as you go....

    My motto was: "one baby step at a time", I know it seems a crazy way to do it but I dealt with each thing that was thrown at me before moving on to the next.

    Best wishes

    Jule

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  • diana50
    diana50 Member Posts: 2,134
    edited March 2009

    hi deb

    the tatoos are to identfy the area on your chest to be radiated.  they are very small really tiny little pinpricks which lay out the area for the techs to get the radiation lined up. depending on your diagnosis it may be a little different.  i had a lot of lymph nodes positive so they addressed that issue during my radiation also.  additionally, if you happen to end up with another cancer in the same area; the radiation onoclogist will have a map from your previous treatment. 

    hope this helps

    diana50

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  • dee1961
    dee1961 Member Posts: 1,672
    edited March 2009
    Hey Deb, how you doing?Laughing
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  • dee1961
    dee1961 Member Posts: 1,672
    edited April 2009

    Deb, you out there?

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  • dswope
    dswope Member Posts: 70
    edited April 2009

    Hey dee,

    I'm still here.  Busy with all these appointments, work, and my daughter is pregnant and living with us.  Also, trying to avoid thinking about all this too much. 

    After I saw the surgeon the first time, she sent me for an MRI.  Now they are saying I have another spot in the same breast, however it almost abuts the other one so it will be taken care of during surgery.  They also found a "suspicious" area in my left breast.  I went last Friday for another biopsy, and am still waiting for results.  I see the surgeon again Wednesday 4-15.  I also had the geneological test done,  but am waiting on the results of that test also.

    So, if I do carry the gene, I don't think I want to go through any restructuring.  I understand it's very painful.  Is it worth it?  Does anybody have any thoughts on this?

    Thanks for being in touch again dee.

    Deb

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  • dee1961
    dee1961 Member Posts: 1,672
    edited April 2009

    Hi Deb

    I'm sorry you are going through all the tests and especially the WAITING part. I hope all your tests turn out well for you. As far as the reconstruction goes, If you do it, be prepared for a long wait to get fully expanded, also it can be very painful, it has been for me at least. I am now dealing with a problem with the skin on the cancer side turning a bit red. I went to the PS today and he tried to drain but there really is no pain or swelling. He put me on an antibiotic just to be on the safe side and we are going to keep a close eye on it. If I lose it due to infection, it takes 3 months before I can try again :(  I really want to have the breasts, but I can't say right now if it is worth it. Will have to wait and see on that one. Good luck on Wednesday an let me know how you are doing. Take care!

    D~ 

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  • NoH8
    NoH8 Member Posts: 2,726
    edited April 2009

    Waiting is the hardest part of the cancer journey, in my opinion. One of my friends also decided to get a bilateral, even though she only had cancer in one breast and afterwards discovered she had LCIS in the apparently "normal" breast. One of the reasons I opted for having both removed was because I didn't want to go through the stress of worrying about the other. I felt like my mental health would be better with a bilateral and I haven't regretted the decision. Maybe if you proceed as if you have the gene, in being overly cautious you'll be pleasantly surprised not to have it, rather than possible the other way around.

    I'm prefectly content w/o reconstruction and have never once regretted the decision. I don't feel like I'm missing anything, but it is a personal decision D.,

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  • dswope
    dswope Member Posts: 70
    edited April 2009

    So, I don't have the gene, however from the 2nd biopsy they have discovered invasive lobular carcinoma, poor tubule formation with no identified vascular or lymphatic space invasion.  The surgeon has given me 2 choices: Bilateral mastectomy or lumpectomy with radiation and constant fear of it returning.  I feel I don't want reconstruction.  I'm 55 years old, my partner doesn't want me to be in a constant state of worry about it coming back, and frankly my self esteem doesn't stem from my breasts!  Although, I can't imagine myself without them!  I am not a small person.  I'm a 44D and feel I'm going to look pretty silly.  Would somebody out there help me address this?  What is it like, how are the prosthesis?  Is it uncomfortable?  Is it hard for a large woman to find bra's that fit and/or are comfortable? Etc.  Any info will help.  My surgeon won't schedule surgery until I make a definite decision.......

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  • dee1961
    dee1961 Member Posts: 1,672
    edited April 2009

    Hi Deb,

    So sorry to hear about your dx. I am totally with you about not wanting to worry about the lumpectomy and the fear of what could happen down the road. I chose the bilat for that reason, I did however want to have reconstruction and the radiation with the lumpectomy would have made recon more difficult. You really have to decide what is best for you and then go for it. Maybe someone out there can help you with the prosthesis, since I have no experience in that area. Good luck to you in whatever you decide to do.

    (((HUGS)))

    D~

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  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited April 2009

    Hi Deb -- I'm sorry you're having to go through this.  When I was faced with all these decisions (I did unilateral, with implant reconstruction), none of my doctors even raised the possibility of going unreconstructed.  I didn't know about this site at the time -- and there is so much information here.

    Here's the forum on going "unreconstructed":
    http://community.breastcancer.org/forum/82

    And a member of that forum, Erica, has her own website which I think is great:
    http://breastfree.org/

    And finally, here's a link to an old comment of mine with what I think is an awesome poster from the early 1970's ("Amazon") of a woman with unreconstructed unilateral mastectomy:
    http://community.breastcancer.org/forum/82/topic/700516?page=1#post_825744

    Best,

    Ann

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  • NoH8
    NoH8 Member Posts: 2,726
    edited April 2009

    ds- I never felt like I looked deformed or silly. when I see my chest all I see is an absence of cancer and that to me is beautiful.

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited April 2009

    I used a prostetic for almost a year and a half.  I am now going through reconstruction.  The prostetics are not bad at all.  It does take a little bit of time to find the right bras and they can be hot and sweaty depending on what your doing and the temp.  I only had one so I can tell you that using one caused me pain because its impossible for them to be completely weighted like a real breast so I was off balance, not enough to tell but my shoulders and my body could tell and it caused alot of pain because of it. 

    I also had to rework some of my wardrobe choices but again you find things that work. 

    Good luck with your upcoming surgery and may you have a fast recovery.

    Teresa

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  • dswope
    dswope Member Posts: 70
    edited April 2009

    Hi Teresa,

    May I ask you why you decided to do the reconstruction now?  May I also ask if your insurance is paying for it?  I have to make a decision today, and I'm still not 100% sure I want to go with the bilateral mastectomy.  I just can't imagine the painful process of reconstruction is worth it.  Let me know how it is for you, will you?

    How long does it take to recover from the mastectomy?  I'm not sure how I'll handle going back to work without breasts!  I'm so heavy on the bottom half of my body,  I do worry about looking like a total fool. 

    Thanks to all of you for letting me ramble on.  Sometimes I'm not sure I'm making any sense.

    Deb

    Thanks to all of you.

    Deb

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  • NoH8
    NoH8 Member Posts: 2,726
    edited April 2009

    ds- I believe insurance must cover reconstruction. I think there was some kind of bill bassed in congress. I took about 2 weeks to feel back to normal, from the bilateral w/o reconstruction. I still had some achiness, but my range of motion was fairly normal. I only needed to take 2 of the pain pills after I was released from the hospital. The achiness felt like bruising, my chest had a lot of black and blue marks from the surgery. I had nodes removed from my right side, so I had some difficulty lifting heavy things. If you wear loose fitting  clothes, I doubt anyone will notice. I always wore loose fitting clothes before. The only way people knew was when I wore tight fitting tops or a bikini.  Nobody stared at my chest. If people were curious I'd just flip my shirt and show them, LOL (but only with close friends). Breast cancer was very freeing for me, because it taught me a lot about what really mattered.

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited April 2009

    Hi.  Well the reconstruction is pain free thats for sure but it is the worst thing in the world.  I did it because I realized how many things I wore showed I had no breast tissue.  I love swimming and going on vacation, mostly to the coast and bathing suits were a nightmare.  Its a personal decision and I gave up enough to breast cancer, I didn't want to give up that.  Im happy with my decision to reconstruct and I am so happy that I had my other breast removed.  I worried alot about it so for me it was a good choice.  If you have any questions please feel free to message me anytime.

    Teresa

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  • Lovegolf
    Lovegolf Member Posts: 513
    edited April 2009

    DS

    I am in close to same situation....go back to Dr Wed....I think it is the fear of it caming back even if I just did more surgery "until they got it all"  I am reaching the point that my state of mind and desire to be able to do all the things I enjoy carry more weight than anything...

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited May 2009

    Ok I just reread what I wrote...LOL.  I swear it has to be from doing chemo because I never made typos like this before...wow.  So what I meant to say was....reconstruction WASNT pain free but it WASNT the worst thing in the world at all.

    And for those of you that did notice how odd that sounded, thanks for not laughing at me LOL.

    Teresa

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  • dee1961
    dee1961 Member Posts: 1,672
    edited May 2009

    I would never laught at you , just WITH you :D

    Are you done with the recon? I have many moons to go.

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  • Lovegolf
    Lovegolf Member Posts: 513
    edited May 2009

    DS

    Had bilat mast Friday 5/1.  Am off pain meds now but still have drains. I just wanted to be cancer free and get the lowest % of it coming back ...I took off bangages and have looked at my chest.  Much like NoH I made the choice to see cancer gone..I know the scars will heal and I am will live strong.  I did not have reconstruction, but I understand that is very personal choice for each of us to make.  Hope is helps...I would be glad to answer any direct questions you have if it will help.

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  • FeyLynn
    FeyLynn Member Posts: 19
    edited May 2009

    Hi All,

    I was diagnosed 3 weeks ago with DCIS and am going through some of the same decision making processes.  I see my oncologist on Fri. to get some treatment options.  I have a list of questions as long as my arm and am very scared of some of the options that she may present to me.  I'm not bothered so much about the actual treatment that I would have to go through,  it's more the waiting that is stressful.  I have had Lymphoma in the past and am concerned about that coming back and the possibility of recurrence of BC in the future.  I am terrified of having mastectomy, I know it sounds vain, but breasts to me are such a big part of being female.  My wife tells me that she loves me regardless, but I don't know how I would feel about myself.  I know that if it saves my life then that is what I would do.

    Anyways, thanks for letting me vent.

    Peace

    Lynn

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  • NoH8
    NoH8 Member Posts: 2,726
    edited May 2009

    Welcome Lynn, sorry you had to join us. DCIS is stage 0 cancer so you're fortunate if you had to get breast cancer, that's what you got. You might not need any treatment beyond surgery. I have always said the waiting is the worst part of cancer. The unknown is always scarier than the known, in my experience. One cancer in a lifetime should be enough :(. When did you have lymphona? Let us know what happens friday!

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  • FeyLynn
    FeyLynn Member Posts: 19
    edited May 2009

    Hi NoH8,  Friday went okay.  My regular oncologist set up an appointment to see a radiation oncologist - the appointment was supposed to be for May 20, but they called yesterday and wanted to cancel and reschedule for May 25.  I told them that was not good enough.  Sooo after some talking and waiting a while, they were able to get me in on a cancellation for tomorrow (Thurs) at 1:00.  See, sometimes it does pay off to be a pain in the ass.  I'll let you know how it goes.

    I had Lymphoma in 2004, finished treatment and have been in remission since 2005.  The chemo wasn't too bad, I shaved my head beforehand 'cause I didn't want to deal with it, and didn't have really bad side effects other than being tired.  I worked all the way through, tried scheudling chemo for a Friday so that I could rest over the weekend and be back at work by Mon or Tues.

    This time around I find things are going a bit slower, possibly because it's a low grade and there is less of a sense of urgency - for them anyways.  For now I am staying positive - what else can you do at this point.

    Hope everyone is well.

    Peace

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  • Lovegolf
    Lovegolf Member Posts: 513
    edited May 2009

    So sorry to hear.  I found out 4/20 and had bilateral Mast. 5/1.  Went today and got last drain out and feel good.  I am cancer free need no chemo, no radiation no drugs.  The peace of mind is worth it to me.  Path report showed more cancer in right than found on mammogram...it had skipped margins.  You will make the right decision for you.

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  • dee1961
    dee1961 Member Posts: 1,672
    edited July 2009

    How is everyone doing?

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  • dswope
    dswope Member Posts: 70
    edited July 2009

    Hey Dee,

    Glad you asked! 

    Actually, 7 days into the CMF and doing well.  I've noticed I feel worse if I don't get enough rest at night.  4-5 hours sleep don't cut it anymore.  I go back this afternoon for the 2nd intravenous MF portion of the CMF.  It's the steroids that got me last week....my partner said it was like throwing a lit match into a gasoline can!  Headache almost daily but nothing I can't handle yet. 

    In quiet moments I can't help but wonder what all this crap is actually doing to my body.  It's very difficult to keep positive when you know all the negative that can come from this. 

    How are you?  Seems not so long ago you were fighting the blues.  Any better?  

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  • dee1961
    dee1961 Member Posts: 1,672
    edited July 2009

    Hey Deb,

    I have been doing okay, I just have alot of pain with the TE's all the time and it makes me depressed. I have pain meds but they hurt my stomach so much its not worth the additional pain. I have another 325 cc to go so that puts my exchange to late fall early winter, cant wait! Glad you are doing okay, sounds like you have had your share of pain as well..we just have to hang in there sista!  Take care  Laughing  Dee~

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  • NoH8
    NoH8 Member Posts: 2,726
    edited July 2009

    Deb- the steroids did a number on me too The benadryl had a paradoxal effect and I was so hyper The next time my onc 1/2ed the dosage and that was helpful

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